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Pediatric Congenital Adrenal Hyperplasia Management: Regret and Long-term Outcomes

NCT07781267 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 40

Last updated 2026-08-24

No results posted yet for this study

Summary

Congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency is a chronic endocrine disorder, often diagnosed in the neonatal period. Severe forms may lead to genital virilization in afected girls and adrenal crises. Management includes lifelong hormone replacement therapy and, historically, early genital surgery, although recent guidelines recommend delaying non-urgent procedures to preserve patient autonomy.This study hypothesizes that pediatric management, particularly early surgical interventions, may influence long-term satisfaction and the expression of regret in adulthood. We will conduct an observational cross-sectional study including adult patients diagnosed with CAH during childhood. Data will be collected using standardized questionnaires assessing medical regret, quality of life, sexual function, and psychological outcomes, together with clinical characteristics and past medical and surgical history.The primary outcome is the prevalence of regret related to pediatric care. Secondary outcomes include quality of life, sexual satisfaction, psychological status, and adaptation of hormonal therapy from adolescence to adulthood. Patient-reported outcomes (regret, quality of life, sexual function, and psychological outcomes) will be assessed in female participants only, male participants will be included for the evaluation of hormonal treatment adaptation.

Conditions

  • Classic Congenital Adrenal Hyperplasia
  • 21-Hydroxylase Deficiency

Interventions

OTHER

questionnaire

Standardized questionnaires assessing regret related to pediatric management, quality of life, sexual function, and psychological outcomes.

Sponsors & Collaborators

  • University Hospital, Lille

    lead OTHER

Eligibility

Min Age
18 Years
Max Age
65 Years
Sex
FEMALE
Healthy Volunteers
No

Timeline & Regulatory

Start
2026-07-08
Primary Completion
2027-03-08
Completion
2027-03-08

Countries

  • France

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT07781267 on ClinicalTrials.gov